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Caregivers Link is facilitating the creation of a community to set up initiatives that support caregivers, who are often neglected or taken for granted in India. Please help Caregivers Link gather information to set up this community. Follow this link for their message and request.

Resources for Indian caregivers

One of the main resources for dementia caregivers in India is ARDSI (Alzheimer’s and Related Disorders Society of India).

ARDSI’s activities are devoted exclusively to help dementia patients and their families. They are involved in awareness activities. developing services, training family members and professionals, and undertaking research. This Kerala-based organization has chapters in 14 cities of India.  All the persons involved are very committed to providing support to dementia patients and caregivers, and to spreading awareness of dementia and its consequences on the patient and the families. They run a helpline, too. Visit them or contact them for information on Alzheimer’s and caregiving.  They also provide information and links for major research studies currently underway on dementia.

ARDSI has chapters in a number of cities. Currently (and hopefully more cities will be added) these are:

  • Bangalore (Bengaluru)
  • Calicut (Kozhikode)
  • Chennai
  • Coimbatore
  • Delhi
  • Goa
  • Hyderabad
  • Kochi (Cochin)
  • Kolkata (Calcutta)
  • Kottayam
  • Mumbai
  • Pathanamthitta
  • Thrissur (Trichur)
  • Trivandrum (Thiruvananthapuram)

You can get the contact details of the chapters from the ARDSI website, which has a link for ARDSI Chapters.

If you are a patient/ caregiver, you can contact the relevant ARDSI chapter for information and support. Many chapters regularly run support group meetings, trainings, and awareness programs also. Typical activities they do include holding seminars and workshops, and publicizing Alzheimer’s and other dementias through photo exhibitions, talks, etc. ARDSI also holds annual conferences–the 2009 conference was held at Kolkata (see ARDSI Kolkata), while the 2008 one was in Bangalore (I attended that one, and it was superb, a great input for both medical professionals and for caregivers).

As I am in Bangalore, I must mention ARDSI Bangalore Chapter, which is very active in the cause here. They run a day care, too, and memory clinic, and have many services that are of help to caregivers. I have used their helpline when I was overwhelmed :-)

And as someone who belongs to Delhi and has lived there for many years, I must also add the link for ARDSI Delhi Chapter. Unfortunately I was not aware of this organization when I lived in Delhi and was coping with my mother’s problem, ignorant about how to handle it best, and I hope my giving this link here will help someone reach out for help in time.

Day care, respite care, and residential facilities for patients are some of the facilities that caregivers need.

In Bangalore, ARDSI Bangalore Chapter (which is promoted by Nightingales Medical Trust) runs a Day Care for dementia patients. Nightingales Medical Trust has also recently inaugurated the 70-bed Nightingales Centre for Ageing and Alzheimer’s. Read about it here.

[if any of you know of similar facilities in ther cities, please write to me]

Another important resource is hospitals that have strong Neurology departments that provide timely diagnosis if consulted. For example, Bangalore has one of the best hospitals for mental health, NIMHANS, for medical input as well as input on caregiving, including counseling.

You can also get information on dementia and for caregiving, as relevant in India, on the site managed by Easai Pharmaceuticals, Memory Solutions.

One important set of resources for dementia caregivers are resources that provide, in general, help in looking after elders, or understanding issues of elder care and support.

A resource valuable for elders and for people looking after elders, is Silver Innings, Mumbai. Silver Innings is run by Sailesh Mishra, and has a website and a blog, and an active Facebook presence.  Sailesh updates the blog regularly with news that is relevant for elders in India, informing us of events and policies, and providing links to resources.

Another useful resource is Dignity Foundation.

Some cities also run Elders Helpline/ Senior Citizens’ Helpline, often a cooperation between soem NGO working in the area of elder welfare, and the police department. These helplines can be used to report abuse of elders, or assist elders in various ways, as well as get information on legal and other issues that relate to elders. They may also provide information on day care facilities, respite care, home nursing facilities, services that provide attendants and nurses, and old age homes.

Bangalore Elder Helpline: 1090 (tollfree) and 22943226

Mumbai: 1298

When patients approach end-of-life stages, caregiving becomes extremely stressful, as caregivers have to evaluate between options and make decisions for a love oen who cannot think. Dementia patients do not always benefit from aggressive medical treatment and repeated hospital visits, and the trade-offs are difficult for lay persons to evaluate. A very valuable input at this stage is an understanding of palliative care issues.

Information about the Indian Institute of Palliative Care can be found at their website, which also has a list of their centres.

[I welcome any news of other dementia caregiving resources in India; please contact me with the information]